'I know we like to think doctors are advocating for our best interests, and sometimes they are, but you are your own best advocate,' writer says in post

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Updated: 9:47 AM PST Nov 21, 2018

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WEBVTT LISA: JC HAS NOT HAD A MEDICALCHECKUP SINCE HE LEFT HIS LASTDOCTOR TWO YEARS AGO.HE HAS BEEN CHECKING OUT DR.REVIEWS FOR TWO MONTHS BUTHASN'T BEEN PERSUADED SO FAR.>> WHEN YOU GO TO ONE OF THESESITES, YOU DON'T GET ENOUGHINFORMATION TO MAKE A GOODDECISION ABOUT A DR..LISA: ACCORDING TO A NEW STUDYJAMA, THE PROBLE IS THESEWEBSITE USUALLY HAVE TOO FEWREVIEWS TO BE HELPFUL.MANY HAD FEWER THAN SEVEN ANDMANY ONLY HAD ONE REVIEW.WE DO NOT THINK THAT IS ENOUGHFEEDBACK FOR AN IMPORTADECISION.ALISA: AND YOU WOULD HAVE TO DIGFURTHER FOR INFORMATION THATCOULD BE CRITICAL TO YOURCHOICE.>> YOU WON'T FIND INFORMATION ONMALPRACTICE CLAIMS ON CERTAINSITES.LISA -- YOU MAY HAVE TO SEARCHTHROUGH MEDIC BOARD REVIEWSITES.LISA: THE WEBSI DOCINFO.ORG ISA GO PLACE TO START.RESEARCH THE HOSPITAL THE DOCTORIS AFFILIATED WITH.CONSUMER REPORTS HOSPITALRATINGS ARE A GOOD SOURCE FORTHIS.JC IS RELYING ON OLD-FASHIONED

Uterine fibroids, which are non-cancerous tumors that grow within the uterine walls, will impact most women at some point during their lives. According to the National Institutes of Health nearly 70 percent of white women and 80 percent of African-American women will have fibroids by the age of 50. But because so many women don’t understand their symptoms, they may not realize that they even have them and never seek a diagnosis.

Evette Dionne, the editor-in-chief of of a digital media company, has been suffering from fibroids for a few years. Because she advocates for her health with her gynecologist, she is receiving the best care possible — but this isn't the case for many women. After recently experiencing a two-week-long menstrual cycle (a common symptom of having fibroids), Dionne decided to tweet about the epidemic — especially because it impacts so many black women — many of whom are forced to have hysterectomies after suffering and being ignored by doctors for years.

Nearly every Black woman I know has fibroids, and nearly all of their doctors have told them it’s nothing to worry about. That’s a lie. You should be concerned, monitoring the fibroid’s growth through transvaginal ultrasounds, and getting second opinions.

Her series of tweets have since gone viral, garnering an overwhelming response from many other women who are also dealing with fibroids. Several shared their own struggles, while others were just inspired by her message of self-advocacy.

I know we like to think doctors are advocating for our best interests, and sometimes they are, but you are your own best advocate.

Dionne is currently writing a book titled "Fat Girls Deserve Fairytales Too" to address how doctors mistreat black women, women of color and people of size. She told Prevention she first learned she had fibroids in February 2015, when she started having heavier menstrual cycles than normal.

“It started with excessive bleeding that forced me to change my menstrual pads every few hours,” she says. “Then, I started bleeding through the pads and even left a blood stain in my office chair.”

Her periods were also longer than normal: Instead of having week-long periods, hers would last for weeks.

“One of my mother's closest friends had fibroids, and I remembered her talking about having similar symptoms,” she adds.

Common symptoms of uterine fibroids

In addition to super heavy periods, other symptoms of fibroids include an irregular menstrual cycle (spotting, erratic periods, etc.), uncomfortable pain and pressure in the stomach, knee and back, fertility complications and difficulty going to the bathroom. However, many women don't show any symptoms at all.

Dionne called her gynecologist, explained her symptoms and scheduled an appointment. When she arrived to the physician's office, he wasn't dismissive, which she has learned is not always the case.

“He scheduled a transvaginal ultrasound that revealed two fibroids — a baseball-sized one that was splitting my uterus in half and a grape-sized fibroid in my uterine wall,” she says. She had a consultation with a surgeon one month later, and the larger fibroid was removed in June 2015.

For nearly three years Dionne was symptom-free, but in June of this year, she started experiencing symptoms again.

“I've had several ultrasounds and biopsies since then, and my gynecologist has found that the grape-sized fibroid has grown several centimeters, which is causing the excess bleeding again,” she explains.

How uterine fibroids are treated

To help her manage her health and keep track of her symptoms, Dionne keeps record of the length and heaviness of her periods in a calendar, so she can give her gynecologist the most accurate information about her fibroid. If her period lasts longer than two weeks, she immediately calls her doctor.

“That's led to me being put on several medications, including metformin for possible PCOS and megestrol acetate to control excess bleeding,” she explains.

Additionally, she sees her gynecologist every six months to get an ultrasound to monitor the growth of the fibroid. She also gets yearly biopsies, just to make sure she's shedding the lining of her uterus every month and that she hasn't developed any cancerous cells.

As far as managing symptoms, Dionne says it's very difficult.

“My doctor has experimented with different medications to control the bleeding, and so far, none have worked as intended,” she says. Dionne continues to take metformin to manage her PCOS and a higher dose of birth control. When her bleeding is really heavy, her doctor prescribed megesterol acetate as a short-term solution.

“At some point, I will have to consider having the fibroid removed to eliminate the symptoms,” she says.

Keep in mind that not every woman with uterine fibroids needs to take medications.

"If a woman with fibroids has no related symptoms, it may be unnecessary to recommend treatment beyond clinical observation over time, as long as the small risk of hidden sarcoma is discussed," Dr. Antonio Pizarro, a board-certified doctor in obstetrics and gynecology, female pelvic medicine and reconstructive surgery, previously told Prevention.

That being said, uterine fibroids are the leading cause of hysterectomies— the surgical removal of the uterus — accounting for more than 200,000 procedures per year. This is usually offered as a worst case scenario option for women with super painful fibroids that haven't responded to other treatments. Those treatment options include surgery to remove the fibroids, medications such as ibuprofen and birth control pills, or ablation — a procedure using radio-frequency energy to destroy tissue.

By sharing her own story, Dionne has not only raised awareness for uterine fibroids, but also encouraged other women to advocate for their own health.

"I hope that my tweets inspire someone to get the care they need and deserve,” she says.

Check out some tips on how to use online reviews to find the best medical care in the related video above.